How Did You Know?…. As Asked By V

Riding in the car with kids always produces some interesting conversations. This wasn’t one I was expecting, though V is full of questions about everything these days. I also didn’t expect the raw emotions to bleed through me as I remembered it like it was yesterday.

How did you know when I got diabetes?

Well, for about a week you were drinking a lot, and soaking through your diapers – which isn’t really normal for babies to do. They’d get so wet that they leaked in the bed and I had to change the sheets. You couldn’t get enough to drink. You’d fall asleep with your sippy cup in your hand at night. And I wondered, “what causes thirst like this? Something causes this. What is it?” (Lots of guilt here, I left unsaid. Including the retrospect that I’d also noticed she looked thin in the bathtub one night, and wondered if she always looked that thin? Was it just my imagination? Again, lots of guilt here.)

And then we went to a birthday party O was invited to, and you wouldn’t eat anything there. You were always a clinger, but I thought you’d at least have cake. Nope. Wouldn’t eat. Just drank from your cup.

The next day was Father’s Day and we went out for ice cream. You didn’t finish yours. You didn’t want it.

The next morning, a Monday, you were very, very sleepy and wouldn’t eat and slept on my lap all morning, almost until 11. And then when you woke up, you were breathing fast and shallow like, [I demonstrated this to her]. That part was scary. I called the doctor, and they asked me to bring you in right away.

So the doctor told you I had diabetes?

The nurse tested your blood sugar, and Dr. Watson came back in and told me you had diabetes, and that you had to go to the hospital right away. They were going to send us to Hershey, but first we had to go to the local ER. I told Dr. Watson I wanted you to go to CHOP. You had to go to the ER first because your blood sugar was so high and you were dehydrated and in DKA, and CHOP’s team wanted you to be stable before they could pick you up.

Were you scared?

I hesitated a moment, collecting my thoughts, feeling almost ancient tears welling up behind my eyes.

Yes. We drove over to the ER and they were waiting for you. They tried placing you in a bed, but you were hysterical and reaching out for me to hold you. But you were also dehydrated and exhausted, so you didn’t fight too much. They started IVs in both your arms, so that you could have fluids to help you feel better; they attached little sensors to your chest and body to monitor your heart rate. I sat on the bed with you and touched you. I kept my hand on you. You’d fade into sleep, which was a relief at the time.

Was dad scared?

Yes, he was.

He thought I was going to die. Did you think I was going to die?

No, I never thought that for a second. I knew when CHOP’s team came to pick you up that they were going to make you better. I had no idea how, but I knew they would.

But dad said he thought I might.

Well, he may have heard some things the doctors were concerned about, that I didn’t hear. I was in shock – I don’t think I heard much of anything. All I thought about was you and holding you and how we were going to get through this.

The concern was the DKA. You know that’s very serious, and can cause coma or even death. The nurses came in every hour and checked your pupils in your eyes to be sure you were okay, and you were.

Did they do lots of tests on me?

I think so. You had IVs in both your arms and both your legs, and they did come in periodically to check on things and run tests. I don’t know what they were for anymore. You were getting insulin in one of the IV’s, so I know they were checking your blood sugars to see if they were coming down. The heart rate monitor was still attached to you, which is normal, and they checked your blood pressure too. (I didn’t mention the mind-numbing screaming she did for hours, the next day, when her fatigue began to wear off and the insulin was making her better.)

Was O there?

He was with us in the ER until Nannie took him home. She brought him down to CHOP the next day to see us. (I know she can hear my voice, somewhat weakened by the memories. I didn’t tell her that her then 6-year-old brother asked me if she was going to die.)

And dad took him home?

Yes, dad took him home and took care of him while you and I stayed in the hospital. I know that was really hard for him, that he couldn’t stay with you. It was very hard for me, to be separated from O for 5 days. I worried about him too, because he was so small and he didn’t understand what was happening.

So then I got a pump?

No, not then. We had to start with shots, which you hated. It was really hard, V. You  were so little and you hated it all, and there’s really no reasoning with a 2-year-old. When I’d prepare the shot you’d run away from us. You’d refuse to eat, and spend half of mealtimes crawling around on the floor under the table. I’d follow you with the spoon too, begging you to eat. (She doesn’t remember any of this.)

You finally got your pump a year later. That was hard too – a new change to get used to. But it was the best thing, because we had so much more freedom and you didn’t have to eat on a schedule as much and your numbers were so much better controlled.

(I didn’t tell her that I hated how she would be tethered to a machine for her insulin. There would always be a site, and tubing hanging off of her, attached to a small box she’d wear in a pouch around her waist. How I hated that I couldn’t hold my baby girl without that “thing” being there, between us.)

Why do I have to have diabetes? Why doesn’t O have it?

I don’t know. There are many theories on why more and more kids are being diagnosed, but none are absolute. Many believe our environment is a huge contributor to this, and I think they’re right. But it’s also about some people having some sort of predisposition toward developing it. Some people have it, and some don’t. And I don’t even think the “experts” can explain that one. I wish I knew. I’m glad O doesn’t have it. But I also wish like crazy that you didn’t.

You would take it from me and have it yourself.

In a heartbeat.

There’s never going to be a cure.

I believe there will be. You know all those things they’re working on to make life better for type ones? There are also a lot of researchers working hard on that cure too. I believe we’ll get there. After all, someone discovered insulin, right? That means someone will find the cure, too. No matter how long it takes.

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4 thoughts on “How Did You Know?…. As Asked By V

  1. V is an amazing soul.
    Wonder where she gets it?
    I kid, of course; the truth is, my heart goes out to V and your family, Tara.
    My daughter has IC, but each family’s struggle is unique.
    If there’s ever anything I can do for you, Tara, you only have to ask.

    Liked by 1 person

  2. As a mother and a physician, this post cuts me to the core. I can’t imagine what your family has been through. I will say that her personality shines through in your posts and she is a tough, smart young woman.

    Like

    • Thank you, Holly. It’s a hard diagnosis to hear, but I also understand how hard it was for our pediatrician to deliver that news too. I have great admiration for doctors, nurses, and all the folks who are clinical – it is a tough job every day. And V – I know I’m her mom but I still think she’s amazing. She has that “it” that so many type one kids have – a resilience and a warrior-attitude that defies the daily struggle. I hate that she has this, but I am grateful that she is who she is – because she can handle it. Thank you for reading, and for commenting.

      Like

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